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Why I No Longer Believe ‘Everything Happens for a Reason’ After My Twins’ Diagnosis

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For as long as I remember. I’ve had the belief “everything happens for a reason.” I had been lucky enough to believe that because good things happened to me in my life in general.

For example, my husband and I met at a time in our lives where neither of us was looking for anything serious. But we fell in love and got married a few years later. We’d always talked about having a family so naturally we started trying to achieve that dream. When it didn’t happen the first month of trying, I wasn’t too worried because I firmly believed there was a reason for it. And that was so we could spend more time together as a married couple.

When we did achieve a pregnancy, we found out shortly after that we were having twins. Very exciting! “I’m a multi-tasker and so organized. I’ve got this,” I told myself. I researched everything that could be researched when preparing for the babies. I was beyond prepared and so excited to rock this whole twin mama thing.

The girls arrived at full-term by a scheduled cesarean section. They both came out crying and spent no time in the NICU. We couldn’t have been happier if we tried. I look back at pictures taken shortly after their delivery and I am literally smiling ear to ear.

At about 3 months of age, my mama intuition told me something wasn’t right with one of the girls. She was having difficulty eating and was floppy like newborns are. Except she didn’t grow out of it. Shortly after my first Mother’s Day as a mother, we found out that not one, but both of the girls have a genetic condition called spinal muscular atrophy Type I (SMA).

SMA is a disease in which my husband and I are both carriers for. Since we had never heard of it nor seen anything like it in our families, it came as a complete shock to us. SMA’s symptoms are similar to ALS, but it affects babies. It is degenerative. It robs you of all your strength. It is terminal. The average life expectancy is “less than two years if not supported with mechanical ventilation,” according to Boston Children’s Hospital. I struggle to find a reason for this to happen to us or anyone else.

Having the belief that “everything happens for a reason” is thinking very naively, as if there’s a big plan for all of us and everything will just fall into place.

I have learned a lot after getting the diagnosis. I’ve learned how much I appreciate and love my husband. He is my rock and keeps me going. I’ve learned there is a lot of good in the world, and people genuinely do want to help. I’ve learned to love without abandon and cherish each and every day because we don’t know what the next day will bring. I’ve learned to embrace our medical “team” of doctors, nurses, respiratory therapists and so many more. But most of all, I’ve learned to stop planning and just let it be. Living in the moment is something I didn’t practice nearly as much as I should have, but it’s the only way I live now.

Life is presented as a series of challenges. Many trials and tribulations. And while we cannot control our difficult circumstances, we can control how we react to them. I choose to live in a state of hope and finding joy in the small things. Negative thoughts and people are no good to me. I think anyone, no matter what their circumstances are, could benefit from living life in the moment, choosing hope and joy and taking action to change instead of waiting for something good to happen. Because I have learned that “everything happens for a reason” just isn’t so.

a family with the mother and father and two twin daughters

Originally published: September 8, 2015
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